Wednesday, October 28, 2009

After a 2-week delay due to low WBC and platelet counts, I finally got the infusion for cycle 6a today. Technically I was supposed to get cycle dose 5b but since 5a hit me so hard, Dr.B decided the 5b "boost" of Gemzar was not necessary and that we'd need to lower my subsequent doses so that they don't slam my counts so much so that we can resume the planned 2-dose cycles. This will also entail a switch from Neulasta to Neupogen for stimulating WBC production in the bone marrow. Unfortunately, that means going in for daily injections instead of getting one per cycle. That's OK though - the office is just 2-3 miles from my house and I can go in for when they open so it won't interfere with my day. What I do worry about though is the side effects of getting it daily - primarily bone pain. The remedy would be over the counter pain meds, but the problem there is that most of those interfere with platelet production so I'm hoping and praying the bone pain will either not be bad or will only occur the first dose or two and then not bother me like what happened with the Neulasta. If it becomes an ongoing issue, I'll be worried about my platelet count getting a double whammy from chemo and pain meds since there is no medication/injection to stimulate platelet production and the remedy for a dangerously low platelet count is transfusions. ick. Well, I give it over to God and let Him control what is meant to happen.
So far, on day 1, I feel pretty good. Only a tiny touch of stomach upset but not enough to interfere with much. I do have a headache that's bugging me but I'm not taking anything for it just yet - waiting til tomorrow and if it's still there I'll take Aleve and that will address the headache and serve as a preventive for the possible bone pain effects of the Neupogen. Other than that, I'm good so far. Of course, the anticipated bad days are generally days 3-7, but the last cycle it started hitting me the first night and got progressively worse for 2-3 days, then day 4 things started to improve and day 5 I felt a lot better. So, we'll just see how it goes this time with the reduced dose.
I wore a super fun hat that was made specially for me by a very dear friend of my family's, Mary Lee. Everywhere I turned - at the doc's office, the pharmacy, the market - people commented on how much they loved my hat and wanted to know where I got it. Mary Lee, you are super talented! Thanks so much for the fantastic hats - I'm loving them! The hat is shown in the picture above :)
Time to get some sleep. Bob is on Cooper duty tonight since he doesn't work tomorrow but I do. I think I'll take the couch downstairs along with earplugs to try to not wake up when Cooper does cry - because I can still hear it when I'm in bed upstairs and have the earplugs in. ;/
Wishing you and yours a wonderful evening, and an abundance of blessings always.
Love,
Julie

Monday, October 26, 2009

So I went to the cancer center this morning, prepared for disappointment. I had read online that although platelets can jump back quickly they probably don't go back over the 100 needed for chemo as quick as one week when you're as low as I was (26). WRONG! My platelets were 115 this morning! The prayers worked! Thank you!! What a huge relief that is - I was afraid not just to leave the house for fear of what could happen if I got into an accident or whatever, but I was afraid IN the house because I'm a bit of a clutzhaha. While preparing dinner last night I was so nervous using a knife for fear of cutting myself while having such a low platelet count. But now I feel safe again haha.
My WBC is lagging just a teensy tiny bit at 1.9 (was 2.3 last week, 1.4 the week prior). It generally needs to be over 2.0 to proceed with chemo. However, there's another number or two that they factor in and thanks to those other numbers, my 1.9 is good enough to move forward :).
I forgot to ask what my iron level was but I'll find out tomorrow when I go back in for chemo. YUP, you heard that right - I'm getting back in for the God given liquid gold cure juice tomorrow! Woohoo!!! They're going to check my #s again in the morning for good measure but as of now, it's a go! :)
I am thanking God, and I thank you all for your prayers! And, I'm drinking a lovely carrot/apple/pineapple juice mix today to help boost that WBC up a bit too ;).
I'll post again tomorrow with more info on the game plan to help prevent and/or manage my counts proactively this next round (#6).

Sunday, October 25, 2009

Monday morning I go to the oncologist for blood work and to meet with the oncologist. They want me to come in a day prior to my scheduled chemo appointment to check my numbers since they were so low last week.
Last week my platelets were 26 (if they get to 20 or below, or if I start bleeding while they're as low as they are now I'll end up needing a transfusion) - they need to be over 100 to get chemo. My WBCcount was 2.3 (up from 1.4 the week prior) - they need to remain above 2.0 to get chemo. My RBCcount was 9.8 (below 10 is anemic) - if they're still below 10 tomorrow I'll be getting some expensive shot in the arse (I'm ok with that).
I'm praying for platelets, white blood cells and red blood cells - for the numbers to be above the required amount to resume treatment. I'm also praying that I can continue to remain otherwise healthy, avoid the dreaded swine flu, and avoid any injury that might cause me to bleed since I don't have the necessary platelets for clotting.
We're going through Purell hand sanitizer like water around here. I carry it everywhere I go and use it countless times per day if I'm out of the house to help avoid catching anything that could make me sick while my WBC count is still so low. My hands are getting dry and chapped so I have to also carry lotion to keep moisturized to avoid natural cuts/scratches.
I'm feeling pretty good. Just tired. I have had a mild headache and all over body aches and pains (muscular) this week, which apparently is normal for this stage of chemo, and I can't take any pain relievers since they affect platelets, so I just try to not think about it and when I'm sitting still I massage my arms and legs and do some gentle stretching for a bit of relief. Bob was home for part of the weekend and helped me get some sleep by taking over Cooper duty at night and letting me sleep in Saturday morning (thank you, Bob!!!). He had to fly out Sunday morning though :( and Cooper was so upset when he saw Dad come down the stairs in his uniform. But once I managed to distract him we proceeded to have a productive day of running errands. I am really missing church while my counts are down...another reason I need them to come up quickly - I can't wait to go back. Today, Cooper decided not to nap until he finally passed out at 5pm ;/ and slept til 7:30pm. Now it's nearly 9pm and he wants to play play play...so it's going to be an interesting night haha.
Well...I'd like to go forward with chemo cycle #6 this week if my blood work meets the requirements - that's what I'm praying and hoping for, as crazy as that makes me. Blood work on Monday, and hopefully chemo on Tuesday.
Thank you so much for your continued thoughts and prayers. I'm so grateful for, and touched by, your love and support.
Love,
Julie

During treatment I need 88g protein daily...this meal satisfies half of that since I struggle to fit protein in later in the day. This also satisfies a fruit and veggie serving (kale and strawberry - kale for bc recurrence prevention), while giving me my daily flax seed for recurrence prevention, one of my 3 servings of glutamine to prevent progression of peripheral neuropathy (chemo side effect), and my max allowable dairy serving with probiotic digestive support (for chemo side effects).

Thursday, October 22, 2009

OK, not really tattoos, but if I squint really hard to blur my vision then I can imagine the bruises that are popping up all over my body as pretty tattoos. haha. I'm up to four bruises now and thinking I really really wish I could do something, besides pray of course, to boost my platelets so that I can guarantee treatment on Tuesday and stop being decorated with these not-so-pretty tattoos. I'll keep praying and squinting at my bruises to imagine them as something beautiful haha.
Normally today I would be down at UCLA attending my breast cancer support group but my WBC count is still considered very low, making me vulnerable to infection, and one of my friends from group told me that last week a couple new members were present and both mentioned they had sick family members at home so it was good I didn't go last week either. It stinks though because it helps me so much to be there with my sister warriors and I miss them.
Since I didn't go to the support group and is a non-work day for me, I decided it would be a day of sleep. So when the sitter arrived this morning I marched right back upstairs to bed and slept for 4 glorious hours, uninterrupted. Anyway, I can't remember the last time I slept that long (that's sad, and scary) uninterrupted - probably that first time I got a hotel room. Because, even if Cooper didn't wake me, the hot flashes usually will. At least with the hot flashes I can just throw the covers off, turn up the fan, turn over and go right back to sleep. Cooper's wakings involve getting out of bed, going across the hall and figuring out why the heck he's up and upset. I love him so much but night time is brutal for me, especially when Bob is away (which is more often than not).
Now that I'm awake I'm working on finding answers to how I will get Cooper the H1N1 vaccine since he would be high risk if he contracted it (history of 2 cases of pneumonia and asthma symptoms since he was a newborn) and I would be high risk if he passed it to me. The pediatrician doesn't have the vaccine yet and is referring people to county h1n1 vaccine clinics in the meantime --- well --- there's now way we're going near one of those clinics with the #s of kids and parents that would be present - that would be like locking myself in a closet with sick people - not going to happen. So, I'm waiting for the pediatrician to call me back to help me figure out what we're going to do to get him the protection he needs.
Lastly, I'd like to give a special shout out to my friend, Pat, who just completed his treatment and who has been quite brave as he withstood very painful side effects and infections and hospitalizations throughout treatment. Even through his very challenging treatments he took the time to communicate with and encourage and pray for others, including me. He's a beautiful person and I'm so grateful and honored to know him. Please include Pat in your prayers, asking God to heal his wounds quickly so that Pat can resume enjoying home cooked meals in place of a very inconvenient and unpleasant feeding tube that he is still dealing with. God bless you, Pat!

Wednesday, October 21, 2009

First, I want to thank everyone for their prayers and positive thoughts that were put out for me. I know that the prayers worked because my WBC count went up from 1.4 to 2.3 by the time I arrived to resume treatment yesterday. Unfortunately, while my WBC count was rising, my platelet count was plummeting. The week before I was at 119, yesterday I was down to 26! In order to resume treatment, platelets need to be above 100. So, I was delayed another week. I was so disappointed and upset.
The doctor and nurses are so wonderful though and they pointed out some very positive things before sending me home. First, my tumor marker - a protein in the blood that helps doctors evaluate the existence and levels of cancer - is low. It's at 14 when anything under 50 in a normal person without a history of cancer is considered normal and under 35 for someone who has had cancer. I would love to cling to this with glee but I know better than that...and I have internet access haha - so I know that there are false highs (and presumably false lows) with this measurement and that is why it's not used routinely in healthy people to detect cancer. I'm not saying I don't believe it - just that I am cautiously optimistic.

Another point made by Dr.B is that he thinks that the low WBC and platelet counts are evidence that we're "kicking the crap out of the cancer cells (and healthy ones too)" - and that's GREAT but it's also a concern (the healthy cell part) since we need for me to complete treatment and avoid complications as much as possible. So, what he said we will do is lower the dose of the chemo meds and switch me to Neupogen (the daily shot for raising WBC production) beginning next week. We're going to skip the "part b" of cycle 5 which would have been a "boost" dose of Gemzar (the secondary chemo drug I'm getting), and when I go back next week they will instead start me on cycle 6 if my platelet and WBC counts are considered reasonable for treatment. This will keep me "on schedule" and they're not concerned about me not getting "part b" since "part a" hit me (and presumably the cancer cells) so hard. *sigh of relief*
Another discovery from my blood work yesterday is that I'm now anemic - right at the line anyway. The first blood draw they did had me at 9.8 for my hemoglobin (under 10 is anemic) but when they saw my platelet count of 26 they were convinced it couldn't be right and they took another blood draw from my arm, hoping that there was perhaps something strange going on at my port site. They just had the blood analysis machine calibrated so they knew the issue wasn't there. Well, the second draw hemoglobin came back at 10.1. Since it was over 10 they couldn't proceed yet with an injection that would address that but since I was 9.8 and 10.1 I was close enough that they are going to initiate the approval process with insurance to prepare for next week since I'll probably need it for sure by then. I'm not really sure what the injection is of so I'll be asking my friend Michelle (who is my chemo nurse and neighbor - love her :)) this week to remind me of the name so I can look into it a bit more.
So that's where I'm at with treatment. Another rain delay haha. On one hand I'm really disappointed because I had hoped and prayed that I'd sail through this regimen the way I did the first series and stay on schedule. But on the other hand I'm glad to have a brief break now that I know how much harder these drugs are on me. I'm incredibly tired all the time. I'm short of breath going up/down the stairs or on my short walks that have tiny hills. I'm seeing the side effects of the low platelet count now when every time I bump into something I get a nasty bruise and now I'm paranoid about cooking (cutting mainly) since if I were to cut myself I wouldn't be able to stop the bleeding since my blood won't clot normally at this level. And I finally have the all over body aches and pains that tend to catch up to you when you have been on chemo for a while. It feels like soreness after running a race or working out really hard but all over, not just in select muscles that were worked out. But if I'm sitting still, in a safe place haha, I feel good (well, until a hot flash hits me but that's another story haha). Still tired, but good.
I returned to work, part-time, last Friday. My team and management have been so wonderful. I'm so incredibly grateful for their support and flexibility so that I can continue focusing on my health but have something different than cancer to distract me and even make me feel useful and productive again. Certainly it's going to be a challenge sometimes with the fatigue, but I know I can manage it as long as things continue to go well with treatment in spite of these little bumps in the road.
Thank you for your ongoing prayers and encouragement. I told Bob yesterday that with him being away so much, the connections I have with my family, friends and neighbors are so critical to keeping me going right now - keeping my spirits up and keeping me from falling into that dark scared place that follows me/us (anyone facing cancer) looking for a chance to take advantage of our vulnerability. But knowing that there are so many people rooting for me, praying for me, and reaching out to me encouraging me, that helps me be positive and be the tough bitch you all know and love haha :) Right? :) Because...

Monday, October 19, 2009

Ever since learning my WBC count was super low I've been on a mission to find things I can do to encourage the # to rise and to protect myself from possible infections or viruses particularly with that crazy H1N1 flu going around. Bob got on the internet in search of ways to up my number and concluded that I needed to up my protein intake which I could only laugh at since my daily intake is already between 66-80+ grams of protein (that's a lot, as recommended by my guru holistic med doc at UCLA). Then a friend of mine told me she had just seen Dr.Oz on TV talking about how carrot juice helped with the production of WBC so I got busy finding a way to tolerate adding carrot juice to my daily routine. ICK. Don't get me wrong - I love carrots. I enjoy snacking on them. But I just can't deal with drinking them. So I posted a request to Facebook requesting carrot juice recipes that would help disguise the carrot juice and I received lots of great suggestions. Today, I finally arrived at the combination I could actually enjoy - it's equal parts carrot, apple and pineapple juice. So, if it ends up not helping to raise my count I will at least not be upset about having to gulp something awful every day. But I got a late start with it, unfortunately.
Since getting home from last Tuesday's appointment where I learned about my crashed WBC count, I've been on a self-imposed quarantine to avoid infections, colds, flu and the like given my increased vulnerability. It was much easier to stay home when Bob was home and could run out and get things I needed and to keep me company so I wouldn't feel isolated or lonely. But he had to head out to work Saturday morning so I faced a weekend of cabin fever with a toddler teething molars (B-R-U-T-A-L). I didn't even get to noon on Saturday before I found myself packing Cooper into the car to get out of the house. It was innocent enough, at first, as I decided I'd play it safe and stay in the car and just drive around while Cooper napped. I drove for over an hour as Cooper snoozed and then when he woke up I couldn't bring myself to just go home and found myself headed for Babies R Us to buy a play yard gate thingie. I decided that if I was going to be stuck at home we needed this thing so that we could create a big play arena in the yard which would prevent Cooper from running off to areas of the yard I didn't want him in, so that I wouldn't have to chase him since I don't have the energy - I am out of breath just carrying him up or down the stairs.
Anyway, I was super careful, didn't touch the shopping cart, brought hand sanitizer and used it after touching anything, etc. I figured this outing scratched the itch to get out of the house and I'd stay put the rest of the weekend. Wrong. I managed to resist the urge to go out only until about noon and then we were up and out again and this time I headed to the food market to pick up a few things. To minimize my exposure to crowds/germs I went to a market I don't usually go to, specifically because they are never ever crowded - not even on the weekends - because they're so ridiculously expensive (Bristol Farms). I could only get a few of the things I needed because their prices were so absurd and then we headed home. On the way home I spoke with my friend who asked if it was safe for me to go out to dinner and I couldn't resist the opportunity to stay out of the house a bit longer and we headed to a local spot to meet up. We went early to avoid the typical dinner crowd and had a great dinner. Thank you, Tara, for helping me escape the miserable self-imposed quarantine tonight :).
I'm hoping that my paranoia about catching something served me well enough the majority of the week and that I won't have reason to regret my little outings this weekend.
Oh, I nearly forgot to mention that on Friday night I had such fun on Facebook with my online girlfriends who saw my post about the #beatcancer initiative to raise money for cancer research and they initiated a "post-off". Several of us chatted via our Facebook status updates - posting frequent updates that included "#beatcancer" to drive the fundraising effort. It was so much fun and I'm in awe - daily - of the amazing love and support sent my way from friends and family who believe in me and want to do whatever they can to help me and so many others who are touched by cancer. Thank you so much for all that you do to help me get through this.
Finally, I have a special prayer request. Please pray that my white blood cell count has risen enough, and that my platelet count has remained high enough, to resume chemo treatment this week. I go back in on Tuesday at 11am pacific time, to have my blood tested and if the results are satisfactory then to resume completion of chemo cycle #5b. Thank you so much for your prayers and positive thoughts!!
Love,
Julie

Wednesday, October 14, 2009

My white blood cell count was too low to receive the 2nd half of my chemo treatment yesterday. I was so upset. The doctor had the nurse explain the game plan to me so here's what I remember - they'll have me go back in one week to test my numbers again and resume the treatment. They'll switch me from Neulasta to Neupogen which is a shorter acting drug that stimulates WBC production and I'll get that injected daily for a series of days following every treatment. The Neulasta is the longer acting version which I previously received once per cycle.
So why is my count so low? Well there is a cumulative drop that occurs with chemo, and my numbers were dropping with each treatment as they expect will happen. The doc had the nurse tell me that it was actually surprising that this didn't happen sooner. Then there is the possibility that some chemo drugs just really hit you harder than others and that appears to be what is happening with the new chemo cocktail I started a week ago.
Besides delaying treatment (thereby causing my treatment end date to be pushed to during or beyond Christmas and thus further delaying surgery and radiation treatment too), the other bummer about this is that I'm now much higher risk for an infection and I basically need to hunker down and stay home as much as possible to avoid coming in contact with things like the pesky swine flu (for which I now also can't get the vaccine until further notice).
Bob, my sweet husband, says that I should look on the bright side and take this to mean that the treatment is working. I have to admit that when I was sailing through the first four treatments there was a fear that it seemed to be too easy to be effective. I even asked my doc a few times and he reassured me that doing well during treatment didn't mean it wasn't working.
Although I'm disappointed by this news, I'm feeling OK. I'm super tired and I noticed last night that I'm out of breath by the time I get to the top of my stairs - just like I felt whenever I had to get up to go to an appointment or down the hall after a couple months of bed rest while pregnant with Cooper. The nausea I felt on days 2-6 has left me, thankfully.
I wish there was something I could do and know that it was helping raise my WBC count but the nurses tell me there isn't anything I can do that I'm not already doing (eat healthy, rest, etc.) - although I know I need more rest than I've been getting these past few weeks so Bob and I are working on fixing that (for instance, we resumed sleep training with Cooper since our trip and other factors have disrupted his ability to sleep long stretches at night).
In other news, I am returning to work (from home) Friday on a reduced (very) schedule. I have mixed emotions about this. I'm excited because I miss my work friends and the distraction that work will provide and get my mind off of cancer. Although part of me is worried that splitting my focus could be detrimental to both my health and my productivity. Despite my fears, I need to do it because the bottom line is that we can't afford financially the drop in pay that would result if I didn't go back at this time. If, however, we find it to become too much of a strain on me we will reassess. I don't think that will become necessary. Fortunately, I work for an AMAZING company that has been so incredibly supportive during this craziness. They have never pressured me to return before I'm ready - in fact they encourage me to take the time I need to get well and check in on me and send me encouraging messages and cards and gifts that remind me often how much they care. I am so truly blessed and grateful for their support and love, now and always.

Thursday, October 8, 2009

On Tuesday I had my first dose of the new chemo cocktail (Carbo+Gemzar). I was excited to learn that I would not need the oral steroids on days 2-3 with this combo and realized the benefit of that omission almost immediately when I got home from the infusion, crawled into bed and slept for three hours. I woke up excited as I realized I wouldn't be spending the first five days following chemo wired on steroids. But by this morning it occurred to me that I was also losing out on the benefit that those steroids brought me - a feeling of strength and well being that carried me through that first five days which are usually the hardest to take with most chemo drugs. When I woke I felt heavy, worn out and uneasy in the tummy. I got up, took the anti-nausea meds and crawled back into bed. For past cycles I could/would just take the meds when I was ready to be up for the day and I never felt queasy or sick but took the meds preemptively as recommended by my doctor. This morning, I needed them just to be able to continue sleeping/laying in bed.
Thursday is my breast cancer support group day and there was nothing that was going to keep me away from it since I had to miss the past two weeks of meetings while I was out of town. I really wanted and needed to be with my warrior sisters today - I needed to be understood in a way only they can understand. But I felt terrible and struggled to get out of bed. I decided to let myself stay in bed until I had just enough time to put clothes on, make my shake and head out the door. Poor Bob was worried about me driving because he hadn't seen me feel this crappy since all of this began. He knew I needed to get there. As soon as I walked into the group room I forgot about how I was feeling physically and I was glad to be there. We had a few new members and the meeting was spent almost entirely on introductions which was a bummer for me since I had so much I wanted and needed to talk about. When we ran out of time one of my friends from group asked if I had time to go get lunch and I was so relieved because she was exactly who I wanted and needed to talk to today about what had been bugging me. We had a great lunch and she was an amazing listener and supporter as I shared my frustrations regarding some recent events. I'm so grateful to my friend for being there for me - thank you, T!
When I got home my tummy felt even worse than earlier, probably because of some not- so-smart lunch choices (I forgot that some types of food can make it worse and since I was feeling OK at lunch I forgot to be cautious). I took a mid-day anti-nausea pill (first time doing that) and Bob sent me to bed where I stayed until dinner time. I'm so grateful that he knew immediately what I needed (rest) and helped me get it without me even needing to ask. Bob took over with Cooper once the sitter went home so that I could continue to rest for a while. At one point I laid in bed and couldn't stand the thought of not spending time with Cooper today so I got up and got him dinner and spent a few hours with my two favorite men before putting Cooper to bed. I skipped dinner, afraid I wouldn't keep it down, until Bob handed me a can of organic lentil and veggie soup and told me I needed to eat something...so that's what I had before heading back to bed. I turned "Grey's Anatomy" on, looked at the episode description, watched less than one minute of it during which time a character threw up blood and then I changed the channel. There was no way I could handle blood and guts or cancer talk tonight. Then I picked up the laptop and began this post.
For those who may be wondering why I refer to this chemo as cycle "5a" (not just 5)--my new chemo meds are administered in two doses, with a week between them. I go back in Tuesday of next week for the second dose (which I'll refer to as "5b")of this cycle and then will be off for a week and then I go back the week after for dose 6a and will continue that process until I complete "8b".
Thus far, the fatigue and queasiness are it for side effects. I'm hoping and praying that remains true as I progress through this week and next. Despite how I felt today, I still deem the treatment to be a blessing and a success. I'm grateful for the medicines I'm receiving and view them as God-sent miracle drugs - even if they make me feel crappy. So when I reveal how I'm feeling, I am not complaining at all - just informing. I know that things could always be worse. I consider myself very lucky and very blessed.

Wednesday, October 7, 2009

This morning I began reading a book that my amazing colleagues at PwC sent to me in a care basket: "Waking the Warrior Goddess: Harnessing the Power of Nature & Natural Medicines to Achieve Extraordinary Health", written by Christine Horner, M.D., F.A.C.S. Dr.Horner's mother died of metastatic breast cancer which was a recurrence after her diagnosis of early stage breast cancer 5 years earlier. Additionally, Dr.Horner saw patients in her cosmetic surgery practice who suffered greatly because insurance companies were denying coverage of reconstruction following mastectomy surgeries. The book begins with the story of Dr.Horner's quest to get legislation passed to require insurance companies to pay for breast resconstruction for breast cancer patients. It took time, determination and a lot of guts, but she did it. Because of her efforts, the law passed in the last day of the 1998 Congressional session after it had appeared to be dead. Because of Dr.Horner's efforts, I (and millions of other women) will not be/feel deformed from breast cancer treatment.
I am grateful to Dr.Horner. I'm inspired by her too. I have known since the day I was diagnosed that my cancer should have been found sooner. It infuriates me that I was refused mammograms for at least 3 years during annual physical exams because I was under 40 and didn't have a "strong family history" of the disease in spite of the fact that women in their 30s is the fastest growing group being diagnosed with breast cancer and that over 85% of breast cancer patients have NO family history of the disease. I am angry that the greed of insurance companies has prevented me from being diagnosed at an earlier stage which could have improved my prognosis - it could have been found at stage I or stage II, requiring less aggressive treatment and giving me a greater chance of avoiding its advancement to my lymph nodes - once it's there the chances of spreading futher go up significantly.
I will not sit back and just let this nonsense continue. I have no idea how to start but I must try to make a difference and I must choose a goal. For now, that goal is to try to get a law passed to require insurance companies to cover routine mammograms/screening for women beginning at age 30 instead of 40. Frankly, I think it should be age 20 but I think 30 is an achievable goal. I expect it to be a tough fight. But I'm tough. Dr.Horner set about her goal knowing she had to get to the top - so I guess that's where I'll start too. She set out looking for someone that knew the President (Clinton) or had access to him. She also had the ability to get up and go on a moment's notice - I don't since I'm in treatment and have to schedule everything around treatment appointments - so I'm starting with a letter. I welcome your input on what my future steps should be, what messages should be emphasized, etc...so please write and tell me what you think.
Here's the letter I just submitted to President Obama via the White House contact page:
Dear Mr. President,
I am a breast cancer patient (dare I say, warrior). I was diagnosed with Stage III triple negative breast cancer (an aggressive form of the disease) in May 2009, at the age of 37. For the three years previous I requested mammograms at my annual physical because I had a hunch that something wasn't right - I didn't feel a lump but my gut was telling me I should be checked. I was refused because I am under 40 and because I didn't have a "strong" family history of the disease (but I did have 2 grandmothers and a great aunt who had it) - these being the requirements by insurance companies to cover the cost of a mammogram.
When I was diagnosed this year, my doctors told me that based on the size of the breast tumor and the number of lymph nodes with cancer and the size of some of those lymph nodes, the cancer had been there for at least a few years but probably longer. I knew then and there that if I had been permitted to have a mammogram three years earlier I would have a better prognosis today.
Additionally, after my insurance company (Blue Cross of California) approved and paid for a double mastectomy surgery, they proceeded to deny coverage of the diagnostic mammogram and breast MRI procedures that led to my diagnosis, indicating that I would have to pay over $8000 for these tests because they didn't believe them to be medically necessary for a woman under the age of 39. I fought this decision and the mammogram has since been covered by my policy, but the MRI is still a battle that takes my attention away from my cancer battle. It's horrifying. I've already paid over $4000 out of pocket between May 27, 2009 - that's my out of pocket maximum for two plan years since my diagnosis came 1 month prior to my plan's year end and treatment began immediately.
Earlier this year, a young pre-teen girl was diagnosed with breast cancer. And, the majority of new breast cancer diagnoses (based on comments from my physicians) are being handed to women in their 20s and 30s.
I would like to urge you and your staff to please consider including a requirement for insurance companies to cover preventive mammograms at an earlier age. I am not a medical expert but I have become very knowledgeable about breast cancer very quickly and I know that the earlier it is caught, the better chance a woman has at beating the disease and avoiding the very costly and dangerous treatment that ensues when the disease advances. I am living that right now. My prognosis would have been far better had I been permitted to have a mammogram three years ago at the age of 34. I know I'm not alone in this. My small support group at UCLA is filled with women in their 30's who have advanced breast cancer. At the very least, women should be permitted to have their insurance cover routine mammograms beginning at the age of 30.
Mr.President, we have one shot at getting this healthcare reform right given the great deal of skepticism and opposition that we're seeing from the right side of the aisle. Please give women a better chance at surviving breast cancer by giving us a chance to detect it earlier through routine mammograms at the age of 30 (instead of 40).
Thank you for your compassion and consideration,
Julie Olsen

Pink Wig Dance

About Me

I'm a Christian, a mom, a wife, a daughter, a sister, an employee, an activist, a friend, a neighbor, and now I'm also a breast cancer warrior and SURVIVOR! This blog chronicles my diagnosis, treatment, and victories against breast cancer.